Sick LIttle Guy

WEll it has been a rough week for this little guy.  He ran fever over the weekend and just couldnt get comfortable enough to sleep.  So I took him in to the ped on Monday and she siad that everything was fine and that is could just be the seperation thing and him waking is his way of making sure I am still there. So we didnt do anything.  The ped did agree with me that Coltyns liver was abotu 1 cm larger then it had been on feb 2, but she said she was not to worred about it because he was not at all jaundice or tender when pushing on it. Then Tuesday night he started with a croupie cough so we decided to ride it out a little since his sister had the same thing.  Well wednesday came around and coltyn and his sister were not feeling well at all and not eating much so i called the ped again and made appointments for Thursday for them both.  When i got to the sitters to pick them up she was holding Coltyn and said he is not happy this morning and wont let me put him down.  He screamed the whole way to the ped then screamed the whole time in the waiting room then continued to scream once we got back in a room.  I had no idea what to do for him cause I didnt know what was going on.  The ped came in and was asking what his symptoms were and said it sounds like he has croup for sure and then looked in his ears and said this is the problem it is infected and then looked in the other ear and it was also infected.  She went out to get teh nurse cause she said we have to give him something for the pain, so they gave him some Tylenol.... Poor baby.  then she looked Kendyl over and well she has had a cough for about 1.5 months that has developed into croup which is not uncommon for her.  She gets croup all the time.  They did tell us kiddos usually grow out of it, so that is what we are hoping for with her.  Anyways they looked in her sinuses and said well this is her problem she is all swollen and full of congestion. So now they are both on amoxcillian and I am hoping they are better before Sunday as it is Kendyls 3rd b-day and we have her party!!!

So other then Coltyn being sick we are doign well.  I am still worred about Coltyn since he will be 10 months in 2 weeks and still not crawling.  He is at least now getting up on all 4's and trying a little, but not very often.  I have asked about it and the ped said they all develop at their own level and he will do it eventually.  I am going to check with his GI team and see that they say when we go back in a month.  We will have teh ultrasound, labs, and see the GI team and the Surgeon team.  I am hoping that they tell me that things look GREAT still and that they dont need to see us for another 3 months like this past time. So we are just taking it a day at a time and enjoying every minute of him and his sister.  I am so ready for the warmer weather to be able to take the kids out and play!!!! We have a zoo goers pass this year so i am so excited to take them to the zoo and do all the extra things and not have to pay!! It was a GREAT Christmas present!!!! We are also trying to plan a trip to Florida for a week in September after everyone goes back to school.  That is all for now.

9 Month Check-Up

So I took Coltyn for his 9 month well check at the ped today.  He is doing very very well.  He is still in the 3% for his weight but considerin he is gaining and not loosing we are good!!! He is 16.13 pounds and 27 1/4 inches tall.  He is in the 25-50% for his height.  His head is also ont eh smaller side, LOL, it is in the 3-5%.  I am fine with all of this though.  He is growing, gaining weight, and developing well.  That is all he needs to do!!  The ped couldnt believe he was 9 months already and she couldnt believ how healthy he looked.  I thank god every day for my little guy and how well he is doing with this crappy liver disease.  So all in all it was a GREAT check-up.  He did have to get 1 shot but other then that he was a happy little boy. 

I have been a little emotional latley with all this for some reason?  I just look at how some people take so many things for granted and just think they deserve everything and dont think twice about family.  I am just blown away at this.  I know it shouldnt bother me but it really does.  I look at life in such a different view then many I guess.  I cherish EVERY minute I get to spend with my family and appreciate what they do for me.  I wouldnt have been able to deal with this without many of them.  I just wish everyone looked at life like this and did things for others and didnt compare themselves and think they are better.  I sat and held Coltyn last night in his room in his rocking chair and just thought how lucky we really are to still have him in out lives and how well he is still doing, and that we have a home and have a healthy 2 almsot 3 year old daughter and that my husband and I both have jobs.  I pray every day for those people out there struggling and going through hard times.  Liver Disease sure dies suck but has opened my eyes to way more then I ever realized. 

Being stubborn

Ok so I took Coltyn to the ped yesterday becuase he has now decided that he is not going to take much formula in a days time.  He should be taking 24-30 ounces a day and he is at 12-15 on a good day.  He started that when i gave him a sip of my milk. OOPS I thought that maybe he had an ear infection and that was why he wouldnt taket eh bottles?! But nope he is good to go just being stubborn.  The ped did tell me to try a sippy cup and see if that helps, she thought maybe he was wanting to be a big boy and not want the bottle anymore.  So we are trying that to see if this helps.  He is eating like a pig with the solid food though.  He is eating at least 2 jars of food and most times at dinner another half a jar if not a whoel one.  The ped did say that was a good thing but we needed to get fluids in him because oherwise he will become dehydrated.  She said even water would be something to prevnt dehydration.  We weighed him and I am happy to say that at 9 motnhs old he has finally DOUBLED his birth weight!!!! Yeah I said it he has DOUBLED his birth weight!!!!!  He is currently 16 pounds and 12 ounces!! HE still isnt gaining very fast but he is gaining so that is all that matter to me!! He did go back up to the 4% for his weight this time.  So we will see how he is doing next week Thursday when he goes to the ped for his 9 month well check.  If he is loosing weight cause of not taking formula then we will have to figure out a new plan.  So for now we are holding on and playing the waiting game until next week unless he gets dehydrated. 

7 Months post Kasai

So Coltyn is 7 months post kasai!!! WOW my how time flies.  He is still doing really well.  We have noticed that his 2 bottm teeth that have come in went from white to a grayish color.  We talked with GI about this and they told us that it is from his bili levels being so high when he was developing them.  Hopefully his permanent teeth wont be like this.  We are about to end his antibiotic this week so it is kind of nerve racking for me as I dont wat him to get sick with Cholongitis.  If he gets this we will be back in the hospital and we are on a roll right now of 3 months in a row out of the hospital!!! We will see how it goes.  Other then this he is a normal 8 month old.  He is still not crawling but will walk all over the place in his walker.  Over time I am sure this will come. He LOVES his big sister.  She can get him laughing no matter what it is she is doing. I LOVE my kiddos!!!!

Update

So it has been 4 weeks since Coltyn has been t the doc and he did start last week with lighter colored stools for 2 days so we decided to call GI and they said to watch him over the weekend and told me things to watch for: big belly, fever, not eating, and jaundice.  Well none of that happened and as of Sunday he was back to regular color!!!! Very happy about that.  I also took him to get his weight checked as I dont think he is gaining very much, and I was right.  He was only up 8 ounces from his last appointments with GI.  He went from the 6% to the 3%.  The ped said she was not to concerned and that we will just wait it out and see how he does when he comes in for his 9 month checkup in Februray.  He went from 15.11 to 16.3!!! He still has not doubled his birth weight!!! O-well I am ok as long as he is gaining and not losing!!! He is still taking his antibiotic until we are out which will be here in about 1-2 weeks then we will see how things go without it.  So things are going pretty good, just take 1 day at a time. 

6 Months post Kasai

Well we went to the doctor on Tuesday, December 13, 2011 for Coltyns check-up.  He was almost 6 months post kasai.  6 months would be on Thursday, December 15, 2011.  We brought his sister cause she has been very concerned about her brother so we thought this would help her out a little.  So we staretd off by having bloodwork done, which Kendyl got a sucker and 3 stickers for, then we went to have the ultrasound done next, Kendyl thought that was pretty cool to see in her brothers belly, and once again she got 2 more stickers, then it was off to see all the doctors.  We saw Jose first-which was a practioner, then we saw Dr. Dillion who was the one that did the kasai.  They were both so happy to see how well Coltyn was doing.  Coltyn was even smiling at them.  They were pleased and said that they wouldnt need to see him for another 3 months unless we have problems.  Then came in Dr. Joerger whcih she wors with our liver doc as as student still, then we finally saw Dr. Turmelle which is the GI doc.  She was also very very pleased with how he was doing and how well his color was.  She said that the labs looked GREAT and that he was NORMAL with most of them!! WE thougth we would NEVER hear those words!!!  She also talked to Dr. D and they both decided to take him off his antibiotic and see how he does without it.  I was fine with it at that ecact moment then on the way home I was nervous about quiting it before the holidays.  I don't want to wind up in thet hospital for Christmas, so I called them later that week and asked if we could continue it til we ran out, which we will have enough to get through January, adn they said that was fine if we felt better about doing that.  So we got an EXCELLANT report from all the above docs we saw!!!  I could not be happier!!! At least the kasai is working and buying us time until a transplant is needed!!!!  I thank god for every day that I get to spend with my little guy!! He has blessed me in so many ways!!!!  So we are free and clear from the doctors until March, 20, 2012!!!!!